Patients

82 JONA • Vol. 33, No. 2 • February 2003
A patient-centered model of care has profound im-
plications for the way that care is planned, delivered,
and evaluated. Although most leaders in healthcare
organizations today embrace the basic tenets of a pa-
tient-centered philosophy, they often find that mov-
ing toward a patient-centered model requires an
unanticipated level of commitment and significant
adjustments in organizational structures. In this arti-
cle, the authors describe how patients and families
have been integrated into the care delivery model by
involving them in planning, decision-making, and im-
provement processes at all levels of the organiza-
tion.
The idea of patient-centered care resonates particu-
larly well with nurse executives and clinicians, who
have long valued the central role of patients and fam-
ilies in the design and delivery of healthcare.
1,2
Yet
even as most professionals in the healthcare arena
readily embrace a philosophy of patient-centered
care, many underestimate the organizational com-
mitment and related efforts associated with moving
from a traditional organizational model to one that is
truly patient centered.
At Dana-Farber Cancer Institute (DFCI) in
Boston, we have been engaged for more than 5 years
in a process of rethinking and redesigning many of
our most critical operations in order to integrate the
voices of patients and families into virtually every-
thing we do. Although this work is far from com-
plete, we believe we have made significant progress
in crafting a new paradigm of care: one that places
the patient and family in an entirely new position
within the organization’s operational and care struc-
tures.
The mechanism through which we have imple-
mented many aspects of this new approach to care
is the Patient and Family Advisory Council (PFAC).
We currently have two councils: one for adult care
and one for pediatric. By working through the coun-
cils, the voices of patients and families are blended
with those of clinicians, administrators, and other
staff as the processes and systems of care are de-
signed and delivered. Patients provide input on or-
ganizational policies, are placed on continuous im-
provement teams, and are invited to join search
committees and develop educational programming
for staff. Members of the councils also sit on the Joint
Committee on Quality Improvement and Risk Man-
agement, a board-level committee that approves the
institute’s quality improvement plan, evaluates out-
comes of quality improvement activities, and re-
views reports regarding sentinel events.
JONA
Volume 33, Number 2 pp 82-90
©2003, Lippincott Williams & Wilkins, Inc.
Making Patient-centered
Care Come Alive
Achieving Full Integration of the Patient’s Perspective
Pat Reid Ponte, DNSc, RN Joseph Nies, APFAC
Genevieve Conlin, MS/MBA, MEd, CRRN Lawrence Shulman, MD
James B. Conway, MBA Patti Branowicki, MS, RN
Susan Grant, MS, RN Karen Conley, MS, RN, AOCN
Cynthia Medeiros, MSW
Authors’ affiliations: Nursing and Patient Care Services (Dr
Reid Ponte); Zakim Center for Integrative Therapies (Ms
Medeiros); Patient and Family Advisory Council (Mr Nies); Clinical
Services, Adult Oncology (Dr Shulman); Medicine Patient Ser-
vices, Children’s Hospital (Ms Branowicki) and Nursing and Pa-
tient Care Services for Pediatric Oncology (Ms Branowicki); Pedi-
atric Oncology (Ms Conley); Nursing and Patient Care Services
(Ms Conlin) and Hospital Administration (Mr Conway), Dana-Far-
ber Cancer Institute, Boston; Nursing and Patient Care Services,
Brigham and Women’s Hospital, Boston (Dr Reid Ponte); North-
eastern University, Boston (Ms Conlin); Patient Care Services Uni-
versity of Washington Medical Center, Seattle (Ms Grant).
Corresponding author: Pat Reid Ponte, DNSc, RN, Nursing and
Patient Care Services, Dana-Farber Cancer Institute, 44 Binney St,
Boston, MA 02115 ([email protected]).
JONA • Vol. 33, No. 2 • February 2003 83
Creating this level of integration requires impor-
tant preliminary work within the organization.There
must be a shared understanding of the critical com-
ponents of patient-centered care. There must be
strong advocacy for the concept at the highest levels
of the administrative leadership team. And there
must be in place a strong, interdisciplinary work
team, for it is premature to think about integrating
patients and families into a team if the underpin-
nings of effective teamwork are not yet in place.
Although individual organizations will come to
these junctures in unique ways, there are themes in
each organization’s journey that provide important
roadmaps for others undertaking such a venture.
What follows is a description of the work at DFCI
that preceded these developments, an overview of
the critical concepts of patient-centered care that
helped guide the process of change, and a discussion
regarding the inner workings of the adult and pedi-
atric advisory councils at DFCI.
Background
In 1996, Dana-Farber Cancer Institute embarked on a
joint venture with neighboring Brigham and
Women’s Hospital (BWH). The joint venture was fo-
cused on merging cancer care services at the institu-
tions into a single program that would eventually be
called the Dana-Farber/Brigham and Women’s Cancer
Center.As part of the joint venture, all adult inpatient
services would be moved to BWH, and most adult
ambulatory services to DFCI. (DFCI and the Chil-
dren’s Hospital of Boston had already implemented a
similar care delivery model for pediatric cancer ser-
vices.) As patients at DFCI and BWH became aware
of the joint venture, they voiced anger and concern
about its potential impact on the quality of care.
Importantly, these issues were being raised at a
time when public trust in DFCI was already being
tested. Earlier in the year, two medication errors at
DFCI resulted in the death of one patient and the se-
rious injury of another. The organization’s re-
sponse—which helped set the stage for a new rela-
tionship with patients—included looking deeply
into the philosophy, systems, and structures that
guided the way it provided care.
3
Like most organi-
zations, DFCI had prided itself on its relationship
with its patients and families and felt itself to be truly
patient- and family-centered. However, the dual
tragedies fostered the development of a profoundly
new level of awareness about the unique insights
that patients and families can bring to organizational
decision-making.
Thus sensitized to the need to listen and re-
spond to patient concerns, DFCI administrators ac-
tively sought to ensure that the voices of patients
and families would be heard as the joint venture
moved forward. Working with their colleagues at
BWH, they invited interested patients and family
members to join committees planning the new am-
bulatory services and the inpatient move. Initially,
staff on these committees worried that including pa-
tients and family members would inhibit open dis-
cussion and undermine the planning process. Their
concerns were laid to rest, however, as they wit-
nessed the role patients and family members could
play in resolving problems associated with each ini-
tiative. After several meetings, staff began to respect
their new colleagues and accept them as full part-
ners in the planning process.
Active involvement of patients and family mem-
bers helped to change the tone and focus of the dia-
logue between the institutions and their patients.
Communication that had focused in part on respond-
ing to angry patients instead became a dialogue that
engaged patients as partners in the problem-solving
process.Appreciation for the contributions of patients
and families was formally expressed during the open-
ing ceremonies for the new inpatient unit at BWH,
when patients and family members who had served
on the committees cut the ribbon.
Recognizing the benefits gained by involving pa-
tients and families in the joint venture planning
process, DFCI subsequently began working to cap-
ture the patient’s perspective at every level of deci-
sion-making and to incorporate that perspective into
organizational policies and actions. After integration
of the inpatient and ambulatory units was complete,
DFCI and Brigham and Women’s established a per-
manent adult patient and family advisory council.
4
Not long afterward, DFCI worked with Children’s
Hospital, which had developed a patient and family
council in 1985 that advised on their overall pedi-
atric mission, to develop a council that focused ex-
clusively on pediatric cancer care.As DFCI began the
move toward increased patient and family involve-
ment, it was crucial for its leadership team to be-
come champions of this new model within the or-
ganization.
The Importance of Executive Leadership
Changing the paradigm of care to a patient-centered
model is a significant shift that requires the leader-
ship and involvement of the senior executive team.
The executive team sets the tone for the organiza-
84 JONA • Vol. 33, No. 2 • February 2003
tion, makes change a priority, and sanctions struc-
tures essential to the implementation of a new
model. Because a patient-centered model touches
every part of the organization, leaders representing
care providers and supportive personnel from each
area must be involved in the change process.
5
The senior executive in Patient Care Services
faces a particularly strong mandate for leadership in
this regard. Direct patient care and daily interaction
with patients and families defines the work of the
clinical disciplines in Patient Care Services.An effec-
tive patient-centered model cannot be designed or
implemented unless the executive leading these dis-
ciplines plays a lead role.
As part of the process of change, the senior ex-
ecutive team must develop a shared understanding
of the meaning and goals of patient-centered care
and foster understanding among others in the orga-
nization.
Patient-centered Care: Overview
A patient-centered model of care is based on mutu-
ally beneficial partnerships among healthcare
providers, patients, and families and has profound
implications for the planning, delivery, and evalua-
tion of care.
6
It is significantly different from the
classic biomedical model of care. Traditionally, care
has been organized around the needs and desires of
healthcare professionals, particularly physicians. Al-
though the centrality of patients and families seems
understood as a basic tenet of healthcare, restruc-
turing organizations around the needs of patients
and families in fact will challenge most hospital-
based organizations to significantly change a long-ex-
isting culture.
A patient-centered approach has been cited as a
way to achieve both higher levels of quality and in-
creased patient satisfaction.Two recent reports from
the Institute of Medicine strongly recommend a pa-
tient-centered approach, noting that patients’ sense
of control and perceived quality of life are favorably
impacted by involvement in their care.
7,8
In their
book, Through the Patient’s Eyes, Gerteis et al
9
make
similar recommendations and describe the impor-
tance of listening to patients and families. Drawing
on extensive interviews, they affirm that patients
want to be more integrally involved in decisions re-
lated to their care.
Patient-centered care has been linked to effec-
tive team performance, which can, in turn, have a
positive impact on quality.The safety literature high-
lights the value of highly collaborative teams and
links them to error reduction and effective perfor-
mance in settings as diverse as the cockpit and the
operating room.
10
A recent Institute of Medicine re-
port on patient safety in healthcare also underscores
the value of effective teams.
11
The report notes that
efforts to develop safe care practices must all be
based on one common element: building consensus
among multidisciplinary, high-performing teams in
which communication, collaboration, transparency,
and joint decision-making occur.
Arguably, when teams expand to include the
“customers” of the service, one would expect them
to become more customer focused in their decision-
making, more proactive about patient problems, and
more effective in working together. These assump-
tions underlie, in part, the push for patient-centered
care.
12-14
Defining and Implementing
Patient-centered Care
At DFCI, we view the patient as an individual, with
individual needs and preferences, and as a member
of a family unit. Just as the patient and the family are
involved in the process of care, they are also in-
cluded in our definition of patient-centered care.
A patient-centered model of care has implica-
tions for every aspect of clinical practice and orga-
nizational structure. When developed to its fullest
extent, it should help define how patients, families,
and providers interact at the individual level, how
clinical services are structured, how ambulatory
units are designed, how bills are formatted, and how
buildings are maintained.
Making the patient and family an integral part of
the healthcare team is a leap from the more tradi-
tional and, in some ways, more comfortable methods
with which we have involved patients in the past.
For example, although satisfaction surveys and focus
groups can give patients a way to voice specific con-
cerns or opinions, they often fall short of providing
ongoing, real-time patient feedback into organiza-
tional strategies and initiatives, and usually fail to
achieve the goal of involving patients in the process
of care. Organizations that rely solely on these snap-
shots of patient input often find themselves strug-
gling to discern how patients feel about specific
aspects of the organization and about the organiza-
tion’s attempts to improve. Patient- and family-
centered models need to move beyond the one-di-
mensional approach, and instead provide opportuni-
ties for ongoing and direct patient input into the
workings of the organization.
4
JONA • Vol. 33, No. 2 • February 2003 85
Pediatric programs have been among the first to
incorporate principles of patient- or family-centered
care. Johnson cites several pediatric organizations
that began by adopting elements of a patient- and
family-centered model into the design and opera-
tions of a few select units. In other cases organiza-
tions developed patient or family committees to ad-
vise on particular projects or on broad institutional
policies.
6,15
By necessity, organizations typically narrow
their scope in this way at the start and identify areas
for initial implementation that will help them articu-
late the meaning of patient-centered care within
their organization. This was our experience, as we
initially formed a patient work group with a distinct
function in mind: namely, helping us ensure that our
patients and families retained or regained confi-
dence in our organization as we entered into the
joint venture with BWH. However, had we limited
our vision to how patients and families could be in-
volved in these activities, it is unlikely that our model
would have evolved beyond the work at hand.
Rather, this initial, more limited involvement served
as a springboard to incorporating the patient and
family as fully functioning members of our team.
The Structure of the DFCI Patient and
Family Advisory Councils
Our adult and pediatric councils were formed as per-
manent organizational structures in 1997 and 1999,
respectively. The overall charge to the councils is to
provide ongoing input on patient care, program
planning, and organizational priorities and decision-
making within the adult and pediatric cancer cen-
ters.The councils are each comprised of up to 15 pa-
tients and family members and several cancer center
staff. Patients and family members on the councils
commit to a 1-year term, which they can renew for
up to 3 years. After their full term is over, members
can choose to continue as associate members or to
resign from the council.
4
Cancer center staff who
are on the councils include the Senior Vice President
for Patient Care Services at DFCI, the Vice Chairs of
Adult and Pediatric Oncology, and representatives
from quality improvement, social work, and other
departments that interface routinely with patients.
The staff attend council meetings and share voting
privileges with council members.
Two patients or family members from each
council serve as council co-chairs, running each
meeting and ensuring appropriate follow-up on
agenda items. Each council also has a staff liaison
charged with linking the councils into the organiza-
tion. The staff liaison works with the council to de-
fine its role within the cancer center and with can-
cer center leadership and staff to identify issues and
initiatives that should be brought to the council.The
staff liaison also coordinates efforts to involve coun-
cil members on institutional committees, work
teams, and other structures.
The staff liaison is appointed by DFCI’s Senior
Vice President for Patient Care Services, who pro-
vides oversight on the efforts to integrate the coun-
cils into the organization’s activities. Senior leaders
whose work brings them into contact with patient
concerns (such as social workers, nurse managers,
and directors and staff in quality improvement) are
ideal candidates for the staff liaison role, given their
intimate knowledge of organizational strategy and
operations and their experience in working with pa-
tients, family members, clinicians, and administrators.
Selecting Council Members
Initially, several adult council members were drawn
from patients and families involved in the joint ven-
ture working group. In addition, early members of
both councils included individuals who had previ-
ously provided input on other DFCI activities or
who had offered suggestions for improving the care
they or their family members received. Currently, po-
tential new members are recruited through outreach
efforts conducted by sitting council members. For
example, the opportunity to sit on the councils is
regularly featured in the council newsletter,“Side by
Side,” which is authored by a council member and
mailed to members of the cancer center community,
which includes more than 700 patients and family
members.
Recommendations from the Institute for Family-
Centered Care have been useful in guiding member
selection.
15
In general, we look for individuals who
are experienced in collaborating with professionals
and with members of the broader community and
who are comfortable expressing their opinion in a
group and listening to the opinions of others. Al-
though we want members to be enthusiastic about
the cancer center and its mission, we also want them
to be able to stand back, view the center critically,
and express criticisms and suggestions construc-
tively.
4
The ideal candidate demonstrates a willing-
ness and an ability to work as an active partner with
cancer center staff and providers.
Potential members are interviewed by a mem-
ber of the council and by the council’s staff liaison.
86 JONA • Vol. 33, No. 2 • February 2003
During the interviews, we try to determine whether
the interested patients or family members are con-
cerned not only with their own personal experi-
ences but also with the broader organizational issues
and the experiences of other patients and families.
We discuss the roles and responsibilities of council
membership in detail and work with the candidates
to determine whether they will be able to meet the
council’s demands on their time and energy.
When the councils were first formed, a great
deal of effort went into recruiting, selecting, and
mentoring new council members. Council members
who had worked on the joint venture and who un-
derstood the meaning and importance of actively
partnering with staff spent considerable time coach-
ing new participants.Today, sitting council members
continue to mentor new members, helping them to
acquire a deeper understanding about the workings
of the organization and the role and responsibilities
of the advisory council.
Council Meetings
Each council meets monthly for 2 to 3 hours.
Meeting agendas are established by the council co-
chairs and staff liaison, and include items suggested
by council members or proposed by cancer center
staff. In addition to participating on the council,
members also participate on council subcommittees
that focus on particular aspects of council activity,
such as communications, recruitment, and special
council initiatives. Subcommittee meetings are typi-
cally incorporated into the general meeting’s time
slot.
Over time, the adult and pediatric councils have
led a variety of initiatives focused on specific issues
affecting adult and pediatric patients. In addition,
members of the councils have been asked to sit on a
broad range of institutional work teams and com-
mittees, thus expanding the councils’ reach and im-
pact within the organization.
Special Initiatives
One of the most exciting aspects of our new rela-
tionship with patients and families is being able to
facilitate and witness patient-generated initiatives
that are designed to improve care (Figure 1).
Our early experiences with the joint venture
working committees were particularly instructive in
this regard. Patients and family members participat-
ing on these committees played a key role in de-
signing the new ambulatory space and in ensuring
a smooth transfer of patients from DFCI to BWH.
Their involvement continued after planning was
complete. On the day of the inpatient move, they
helped transfer patients and equipment from DFCI
to the new inpatient unit. After the move, they re-
viewed patient satisfaction data and conducted
“rounds” during which they interviewed patients
about their transfer experience and about their in-
patient care. In conjunction with the inpatient
nurse manager and nursing staff, council members
reviewed their findings and designed ways to de-
crease patient anxiety and confusion associated
with the move.
Today, council members continue to conduct
patient rounds. These rounds benefit patients, who
typically welcome the chance to speak with another
person who is living with cancer. The rounds also
benefit the organization, because patients often use
them as an opportunity to offer suggestions for im-
provements in care at the cancer center.
4
Our adult council has also developed and im-
plemented an educational program for first-year on-
cology fellows. Over dinner, council members en-
gage the fellows in conversation about the cancer
patient’s experience. With direction and support
from the director of the psychosocial oncology ser-
vice, the group provides a forum where patients and
fellows can interact and share comments, anxieties,
or concerns about the relationship between physi-
cians and their patients and families.
PFAC initiatives have also examined specific as-
pects of cancer center operations. For example,
through conversations with patients, adult council
members learned that patients with neutropenia
who were admitted after office hours often experi-
enced long waits in the emergency department.
These waits were not only exhausting but also de-
layed the start of treatment. Working through the
council liaison, the PFAC formed a work team that in-
cluded council members, nurses, physicians, and
Figure 1. A subset of adult and pediatric council initia-
tives.
Teen needs survey
Publication of council newsletter (Side by Side)
Study of unplanned admissions for neutropenic patients
Study of emergency room visits by pediatric patients
Study of wait time in outpatient clinics
Patient rounds
Educational program for first year oncology fellows
JONA • Vol. 33, No. 2 • February 2003 87
staff from admitting, medical records, and the emer-
gency department. Together, the team analyzed pa-
tient satisfaction data, patient flow, and other factors
associated with the admissions process. Their work
resulted in recommendations for a modified process
that involved using the telephone to screen patients
at home and then directly admitting selected pa-
tients to the inpatient units, bypassing the emer-
gency department altogether.
4
Similarly, the pediatric council initiated a project
examining the experiences of children brought to
the emergency department. After careful study, the
council recommended that pediatric oncology pa-
tients should be triaged directly into treatment
rooms, thus avoiding a long wait and potential ex-
posure to infection in the waiting area. Emergency
department staff accepted the council’s suggestion
and worked with the council to design and imple-
ment a new “ED Fast Track” system that has elimi-
nated wait times and yielded increased satisfaction
among oncology patients and their families.
Participation on Cancer Center Teams
and Committees
Cancer center staff, unused to collaborating with pa-
tients and family members on operational issues,
were initially reluctant to involve members of the
councils in planning and program development ac-
tivities. However, staff who interacted with the
councils soon began to realize the value of includ-
ing patient and family representatives in a broad
range of institutional initiatives. Soon after the coun-
cils were formed, the organization began to ask
council members to participate on cancer center
work teams and improvement initiatives. Council
members joined staff in space planning, on search
committees, and on improvement work teams.
Council members have also participated in visits
from accreditation agencies and, most recently, have
joined the Multidisciplinary Lead Team, a high-level
steering group that is overseeing multiple improve-
ment initiatives focused on improving care in the
ambulatory units.
Patient and family involvement is now an ex-
pectation rather than an exception, and members of
both councils sit on an increasing number of stand-
ing committees (Figure 2). By participating in these
groups, council members have a voice in setting or-
ganizational policies and in monitoring and guiding
operations. For example, PFAC members sit on the
adult and pediatric Clinical Services Committees,
which set standards for inpatient and outpatient
care. Even more significantly, PFAC representatives
also attend quarterly meetings of DFCI’s Joint Qual-
ity Improvement and Risk Management Committee.
This board-level committee is mandated by the
Board of Medicine and is composed of senior mem-
bers of the organization. During its meetings, the
committee reviews DFCI’s annual quality improve-
ment plan and the results of improvement activities
reported by the Medical Staff Executive Committee,
the Executive Committee for Research, and the Ex-
ecutive Management Group. The committee also re-
views reports regarding sentinel events within the
organization.
As members of organizational work teams and
committees, PFAC members face the same expecta-
tions as other DFCI staff for protecting patient con-
fidentiality. Similarly, council members on these com-
mittees are asked to demonstrate objectivity and
discretion as they work across organizational bound-
aries. When PFAC members are appointed to com-
mittees, they are oriented by senior clinical and ad-
ministrative staff and periodically receive additional
off-line coaching and support.
Maintaining a patient and family council and
having council members participate in a broad range
of institutional activities inevitably entails some
costs. Upon careful consideration, we believe that
the benefits associated with this work far outweigh
the costs that we incur.
Ad hoc groups
Search committees
Pediatric clinic renovation planning
Radiology renovation planning
Improvement initiatives and workteams
Medical records availability
Chemo turnaround time
Multidisciplinary Lead Team (overseeing multiple am-
bulatory improvement initiatives)
Inpatient Care Improvement Team
Committees
DFCI-BWH Adult Oncology Clinical Services Commit-
tee
DFCI-Children’s Hospital Pediatric Oncology
Clinical Services Committee
Nursing and Patient Care Services Leadership Group
DFCI’s Joint Quality Improvement and Risk
Management Committee
Figure 2. A sampling of cancer center committees and
work teams that include council members.
88 JONA • Vol. 33, No. 2 • February 2003
Resource Requirements
Resources associated with maintaining the adult and
pediatric councils include the time that cancer cen-
ter staff spend on supporting the councils and par-
ticipating in PFAC activities, expenses associated
with publishing the council newsletter and other
publications, and incidental support for council ini-
tiatives. Currently, one full-time administrative assis-
tant is dedicated to supporting the councils. In addi-
tion, the council liaison and other DFCI staff spend a
combined total of 8 to 12 hours each week working
to ensure council integration into institutional activ-
ities. At this point, however, work to integrate the
councils into cancer center initiatives is seen as a
part of normal business and is folded into routine ef-
forts to ensure a representative, multidisciplinary ap-
proach to planning and operations.
Patients and family members on the councils also
invest a significant amount of time in council activi-
ties. For many, the monthly meetings represent just a
portion of their investment, and they commit an ad-
ditional 10 to 15 hours per month to committees and
work teams.As noted above, potential members must
understand the time demands associated with partic-
ipating on the PFAC and should be screened for their
ability and willingness to make such an investment.
Discussion
When the adult and pediatric councils were first es-
tablished, DFCI’s leadership team hoped they would
provide ongoing and detailed information about pa-
tient satisfaction, preferences, and recommenda-
tions. Leaders also hoped the councils would help to
reassure patients about the cancer center’s commit-
ment to patients and families and improve patient-
provider collaboration. But few at DFCI anticipated
how the councils would evolve to become an inte-
gral part of organizational decision-making and an
important component of quality patient care.
Our lessons learned have been many and valu-
able, and are discussed in the following sections.
Collaboration and Trust as Prerequisites
Bringing patients and family members into an insti-
tution’s decision-making processes and onto organi-
zational work teams requires a level of trust and mu-
tual respect between patients and providers that
goes beyond that encountered in the typical
provider/patient relationship. Such trust typically de-
velops over time, as council members and staff work
side-by-side to understand and address institutional
problems. Before patients can be brought into deci-
sion-making roles, however, the leaders and staff
within the organization must themselves operate
with a high degree of mutual respect and trust.
At DFCI, trust was forged among the leadership
team and between administrators and clinicians by a
process of introspection and self-examination that
resulted from two serious medication errors. Ironi-
cally, the errors prompted not only the development
of new and better medication administration sys-
tems, but also the development of more open com-
munication and effective collaboration at all levels.
The Benefits of Full Disclosure
As patients and families participate on work teams
and committees, they are inevitably exposed to orga-
nizational problems and missteps. At first, such dis-
closure may seem threatening. Many healthcare orga-
nizations are inclined to avoid discussing potentially
harmful incidents with patients unless a lawyer is
present or unless the discussion occurs within the
context of risk management or litigation activities.
Certainly, the issues of disclosure and perceived
organizational vulnerability must be raised before
patients and family members are brought in as mem-
bers of the team.We have found that the benefits of
patient and family involvement far outweigh the
risks. For us, viewing the patient as a partner rather
than as a potential adversary has resulted in more
open patient-provider communication, earlier identi-
fication of potential problems, and development of
more effective solutions.
Engendering Patient Commitment
Before an organization can begin to include patients
and family members in institutional efforts, it must
have a dedicated and committed community of pa-
tients. Our efforts to develop the PFAC may have
been eased by the strong relationships that we, as a
cancer center, inevitably have with our patients. Re-
lationships between cancer care providers and pa-
tients are often long term and marked by an unusual
level of intensity and intimacy.
16,17
In many ways, how-
ever, we are no different from other healthcare
providers, who also have populations of patients
who require extended or repeated care and with
whom they develop a strong bond. Patients and fam-
ily members affected by heart disease, diabetes, neu-
romuscular disorders, mental illness, and other
chronic conditions can offer a unique perspective on
care and treatment and may be candidates for partic-
ipation in patient-centered efforts. Patients who ex-
perience a short-term relationship with a provider
may also be interested in broader participation in or-
JONA • Vol. 33, No. 2 • February 2003 89
ganizational activity, and can frequently offer insights
into the organization’s image and operations.
PFAC Impact on the Patient-provider
Relationship
Perhaps inevitably, the adult and pediatric councils
and broader patient and family participation have
impacted the patient-provider relationship at our or-
ganization. Patients and family members are now
partnering with cancer center staff on issues that
were previously restricted to clinicians and adminis-
trative staff. One consequence of patient involve-
ment has been the development of a greater sense of
equality in the patient-provider relationship at the
level of direct patient care.
Nurses, physicians, and other clinicians tell us
that when working with a patient or family member,
they often consider whether the individual would
be interested in participating on the adult or pedi-
atric council. Such consideration reminds the clini-
cians that patients and family members are partners
in institutional and program planning, and changes
the way staff perceive and work with the patient.
Similarly, patients and family members who partici-
pate on a council have reported a new level of
provider-patient collaboration.They begin to realize
they are not beholden to clinicians but instead can
play an active role in their own care planning.
The Importance of Strategic Planning
When we set about the work of formalizing our coun-
cils, we were committed to a well-conceived set of
goals and expectations. As we proceeded with each
step of the process, there was ongoing attention to the
unique cultures within our organizations and to how
the work was progressing.This process of reflection al-
lowed us to evaluate the work in an ongoing way and
to plan needed change accordingly. We believe that
this careful attention to process accounts in large part
for our ultimate success. A venture such as this is
bound to be at best ineffective, and at worst destruc-
tive, if a less careful, quick-fix approach is taken.
Remaining Challenges
Our work in developing a patient- and family-cen-
tered model of care is not complete. We have found
that in many ways, developing such a model is a jour-
ney. As we reach one destination, our understanding
of what it means to be patient and family centered
deepens and new opportunities for patient and fam-
ily involvement are revealed.
For example, during the past year, we have fo-
cused as an organization on ensuring that minorities
have equal access to clinical trials. As council mem-
bers became involved in discussions about this
issue, they recognized that the councils also do not
adequately reflect the broad range of minorities
served by the adult and pediatric cancer centers. As
a result, both councils have begun work to recruit a
more representative mix of patients and family mem-
bers for participation.
A larger challenge relates to how our organiza-
tion can more fully bring the concepts of collabora-
tion, shared decision-making, and partnership to the
individual patient-provider relationship. To our ad-
vantage, we find that our clinicians, who embrace
these concepts philosophically, welcome the
chance to include patients and family members in
our efforts to reshape aspects of day-to-day care so
that it becomes even more patient and family cen-
tered.
Conclusion
We believe that our work with the adult and pedi-
atric councils has enabled us to begin to define an
entirely new approach to care: one that truly places
the patient and family at the center of our mission,
at the center of our organization, at the center of our
systems, and at the center of every individual clini-
cian/patient encounter.As we go forward, we plan to
study more rigorously and quantify the impact of our
patient- and family-centered model on patients and
staff. We hope that others will benefit from our ex-
perience, and will join us in finding new ways to in-
corporate the voices of patients and families into the
design and delivery of healthcare.
Acknowledgments
The authors thank Beth Kantz and Jane Corrigan
Wandel of Corrigan/Kantz Consulting for contribut-
ing to the writing and editing of this article.
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